Exciting News!!

Well to catch everyone up...Tucker had another infection that kinda caught us off guard on Thursday night...but we caught it really early so he was back to his normal adorable self by Friday night! They were going to try Friday to put him on the CPAP, but because of the infection they decided against it. They were maybe going to try it today but it didn't end up happening, they decided to try weaning his ventilator and he seemed to do pretty well with it. They have decided that tomorrow will be the big day to try taking him off of the ventilator and onto CPAP!!! This has been a long day coming but we are so excited and happy that he's doing well enough to try it. They also took his broviac out on Friday...they think that was part of why he was getting so many infections and he really didn't need it anymore...he's getting all of his nutrition through breast milk that they fortify with calories and such...he's on full feeds and he definitely loves his milk...what can I say my kid's a piggy!!! Thank you all for following along with what is going on with our little man...you've shown us what true friendship is and we are so blessed to have such wonderful people in our lives!!! I'll post more tomorrow when I can and let you know how it goes...our love to everyone! Thank you again!!!

All our love,
Audra, Danny and Tucker

I Forgot...

We've been able to hold him everyday this week!! So have my parents, and he loves it! Now he lays there and looks around and just checks out everything around him. He even lays on his little table and checks everything out...you can just see what a difference a couple weeks has made!! He's such an amazing little boy...God has blessed us in such wonderful ways!!

Good Days

So I thought I'd update everyone on what's going on with Tucker. The doctors decided to try another round of steroids (third time's a charm) to see if it could help his little lungs out so they could wean his ventilator settings and get him on CPAP (continuous positive airway pressure) it's what people with sleep apnea wear, it basically pushes air into his lungs constantly (that's a really really rough explanation of what it does) but you get the picture. So far it's been working really well...they've been able to wean him a lot on the pressures which is great, and they're talking about taking his broviac line out. That's HUGE, it means that he no longer has any lines, so the only thing we're focusing on is getting his little lungs working for him better. The past few days and nights he's been doing sooo much better, it's amazing!! His oxygen concentration has been down as low as 40%, which hasn't happened in weeks. His pressures are still pretty high but the fact they've been able to wean as much as they have and he's been able to tolerate it is just amazing. He's up to 50 mLs of milk every three hours (it's almost 2 ozs) and he's growing fast!! Some of the preemie outfits I have for him are too small now...which makes me happy and sad at the same time...just cuz they were soo cute! All in all this week has been a wonderful week...he has shown just how tough and strong he can be, he's still not out of the woods but I think (I haven't heard this from the doctor yet) that he might be on his way to getting better. I just pray that once they stop the steroids he's able to keep this up!! Today is his last day before they start weaning them, so we're keeping our fingers crossed this was the boost he needed and he can start doing it on his own! I have to say though that we are very blessed that he's turned around so fast. They haven't talked about taking the breathing tube out just yet and putting him on CPAP, I don't know when they're going to try to do it...I'm waiting for the doctor to go on rounds so I can call back and see what he says!! I'll update more when I know more. Thank you all for your prayers and thoughts...your support is what's getting us through this! We love you all!!!

Wonderful Moments!!

Sorry it's been so long since I've updated everyone but things have definitely been hoppin around here. Today they decided to try Tucker on the conventional ventilator to see how he'd do...and he did pretty well actually. He did give us some scares with some pretty serious de-sats, but most of them were caused by his wiggling or just getting mad for one reason or another. My Mom, Danny and I rushed over to the hospital because I was determined to hold him before they put him back on the high frequency (because that seems to have been our luck). I waited all day and they kept saying well if he can stay stable for an hour then you can (they obviously had never met my son before!!) Finally, I looked at his nurse Rebecca and I just said please, I need to hold him because I'm almost positive they're going to put him back on the oscilator, and I couldn't help but cry thinking about it. I think she knew I was desperate so she talked to the charge nurse and Christina the respiratory therapist (who is wonderful!!!) and they agreed that we could do it once they had given him more morphine and a dose of ativan. Everyone was nervous (including me) because he had just been so up and down...but they were willing to try and I love them so much for it! He did de-sat as they got him ready and moved him to me, but once I was holding him he calmed down a lot. At first I just cradled him like you would any baby, (and he gave me such big smiles!!!) but I could tell he wasn't totally comfortable, so I talked them into letting me hold him in the Kangaroo position, which is skin to skin upright on your chest. THE BEST FEELING A MOTHER CAN HAVE!!! Once he got there, he pretty much stopped having de-sats...he would have little ones here and there but not as significant as they had been. There are absolutely no words to describe how it feels to hold a baby you thought for sure you were going to lose (on more than one occassion), I don't think any feeling will ever top it. To feel his little body and know that for once I was the one person who could give him comfort and could tell almost exactly what was going on with him is something I wish everyone could feel...not for these reasons though! Holding him makes everything we've gone through seem so small...it's such a huge accomplishment for him, and it feels wonderful for both of us, at least it seems to for him. He felt completely relaxed and calm, and even when he'd start to tense up I'd take his little hand and just kiss his little head and talk to him and it seemed to help, and there is nothing that tops that feeling. He is such a little wonder...he is the true meaning of strength, anyone who has seen what he's been through will agree I think. He continues to prove the doctors wrong...everyone assumed his blood gas would be horrible tonight because of all of his bad episodes, and yet it was a pretty good one, and that's all I can ask for. He has made me so proud, and I know that no matter what happens God has wonderful things planned for him! He is a true miracle and his will to fight and live is something I never thought I'd be privilieged enough to see. He has made my life so bright and wonderful, it's a feeling I'll never be able to describe. We are so lucky to have such wonderful nurses, doctors and respiratory therapists working with him, who are willing to do this for us...they will forever be in our hearts!!!

Reality Check...

I was about to sit down and write out how frustrated I was and how today had definitely not been the best day, when I opened my myspace account and found this email...

We do not know each other, I just happen to come across your page but I felt the need to let you know that your story has touched my heart. I can see the strength you carry for your little boy and I admire you so much for that. I have a 2 year old son and a 2 month old son and seeing your pictures made me realize what a true blessing I have and how I need to stop and appreicate the gift of life more often and not take it for granted. I am praying VERY VERY hard for you, your family, and most of all baby Tucker. I will continue to pray for him daily....God can work miracles...you just have to believe.

It made me stop, smile and cry. This person I don't even know was wonderful enough to remind me that no matter what happens I have been blessed with the joy of a beautiful baby. If there is anything to come from Tucker's story, it's what she said. We have been blessed in other ways from what we're going through, we have met wonderful people even though it's for the worst possible reason, and I will never forget them or what they've done for us. This last week has been really hard, with too many ups and downs...but we're so blessed to have so many people who in a sense are going through this with us, just because of how much they care about us and Tucker. We're very lucky for that...and Danny and I are lucky to have each other, and tomorrow will be our one year anniversary. I still can't believe it's been a year already. It has been a year of huge ups and downs, but I know it's brought us closer together. I am such a lucky woman to have such a wonderful man as my husband, and Tucker is lucky to have such a wonderful Daddy, who is completely devoted to him. I just can't wait until Tucker is home and our family is complete. Our lives have been so blessed by Tucker, even through the hard times and even when we weren't sure if he was going to make it...he has taught us so much, and we love him with everything we have. Our world is wrapped up in that beautiful little boy, and we are lucky to have him. No matter what happens, our lives have been made brighter because of him...we've experienced unconditional love, and it's such a wonderful, beautiful thing. I pray that everyone is touched by the love of a baby at some point in their lives...there is nothing more special than it.

Long Days...

Right now I'm sitting in the waiting room at Children's while they do a Lumbar puncture on Tucker. They did an EEG for a few hours to make sure the phenobarbytol (which they gave him three doses of before it took effect) was working. He finally stopped having seizures, and they did the ultrasound on his head to make sure the seizures weren't caused by something going on in his brain. The ultrasound looked good, so their next option was to do the Lumbar puncture to rule out meningitis, because it is possible that the seizures were caused by the infection itself and not because it turned into meningitis. So now we're waiting for them to finish the puncture, which could take two to three tries. They'll know the preliminary results within three hours, and they'll know the definite results within 24 hours. This is the last thing I wanted to happen to my son...I heard another family talking about their baby having to have one done and it scared me to death. We have a wonderful nurse and nurses and doctors, who are going to be doing this so we have a lot of faith in them. On a little happier note, when they took all of the electrodes off of his head after the EEG they let me wash his little head and he loved it!! His sats went up and he was moving his little leg, which is good, yesterday and earlier today he was so sick he didn't even feel like moving and wasn't even trying to. We're very lucky for at least that. We're keeping our fingers crossed and hoping and praying for the best. Thank you for all of your support and prayers, we're very lucky!!!

Hard Days

Yesterday was one of the worst days we've had with Tucker, I called the hospital around 10 am and they told me he was on 100 percent oxygen and his oxygen saturation was that great...so we rushed to the hospital and what we found was that he was saturating in the 50s and 60s which is horrible, they switched him around on ventilators and added nitric oxide and his saturation went way up. Then they found that he had an infection in his blood stream, and that he might have a pneumonia. He had two hours worth of milk in his tummy that was un-digested which isn't good at all, so they pulled it all out. He started getting a little better with all the changes and the anti-biotics, so we felt comfortable going home. I just called today and his nurse told me that they think he might be having seizures, he stiffens up and his heart rate and blood pressure zoom up and then when he relaxes he de-sats. They're doing an EEG right now to check his brain, and they're afraid the infection may have gone to his spinal fluid and turned into a type of meningitis, so they're going to do a Lumbar puncture (spinal tap) to check, if he can tolerate it.

I thought when I walked in yesterday that he was dead or dying, and now I don't know what to think about today, I thought by last night they probably had the infection under control because he seemed to be acting a little better. When we first got there he would kind of squeeze my finger but he wasn't moving or opening his eyes, by the time we left he was opening his eyes a little bit and moving a little bit. I don't know what's going to happen today, I really don't want them to do the Lumbar puncture, it scares me so much, but I know if they don't it could kill him. I'm worried about the long term effects of these kind of infections and just everything really...and I don't even know if he'll make it through all of this. And through it all I just want to hold him and comfort him and make him better and there's absolutely nothing I can do and it just tears me apart to know that. I'm so afraid the next time I hold him won't be because he's doing well...and that scares me because I'm not ready to let go of him yet, to lose him. I know that whatever God decides is for the best, and I will cherish every second I've had with him but I'm not ready. I just wanted so badly for everything to go perfectly for him, to get him to where I could hold him all the time and let him know how much I love him, and how much faith I have in him. I just don't know what God wants or what he's going to do...I pray that he'll let me be his Mommy and take him home and do all the things little boys are supposed to do. I just don't know....I am so lucky to have had as much time with him as I have, and to have gotten to hold him. I am thankful for that everyday...and I pray that he'll get through this and we'll take him home and be a family. I don't doubt Tucker, I know he's a fighter and he's tough, but I'm worried that this might be more than he can fight back against. We're about to head to the hospital...I'll write more later.